A Special Prophy for Nursing Class

Eli's reward for being so brave

Today, Eli let Matt give him prophy in front of his nursing class (37 students + 1 teacher).  When Matt first asked him if he'd like to do that, Eli was very excited!  He was excited this morning before we went.  Then, when we got there, we discovered that we forgot the numbing cream.  We finally got him to agree to do it for a special surprise afterwards.  Then he saw how many people were in the class and hid in the next room while Matt was setting up.  He didn't realize there would be so many people watching. He got pretty uneasy, and wanted to go home.  He hid behind me when we came in the room.  Isaiah was right by his side the whole time, encouraging him and being a brother.  When it was time, I sat him up on the desk.  He was still uneasy and wanted to leave, but he sat still.  The class was so sweet.  They did all they could to make him more comfortable.  They gave him candy, were calm and encouraging to him.  It worked.  :)  He stuck his chest out and Matt rubbed on the chloroprep.  Then, he kept his chest big and turned his head to the side to be sure not to breathe on it.  He kept his chest big when Matt put the needle in.  He is used to numbing cream.  One of the students asked him if it hurt, and he nodded yes, but stayed focused and still.  Matt explained each step, talked about hemophilia, and emphasized the importance of sterility during the treatment.  I was able to say a few things too.  Eli didn't want to say anything, but he was free to speak if he'd wanted to speak.  I was encouraged that one student asked if they should wear a mask to access ports.  After the teacher answered her question, I told her that any effort made by a nurse to keep a port safe from infection means the world to parents.  A mask, extra alcohol swabs, careful sterile/clean technique earns a lot of respect in the eyes of parents, not to mention the obvious benefit of protecting the patient from port infection.

After Matt de-accessed and I was holding pressure with the gauze,  many in the class came up to thank Eli and compliment him on how well he did.  One girl even gave him some money!

I am very grateful that we had the opportunity to share prophy and our knowledge and experience with ports with the nursing class today.  They were very grateful to us too.  I am so proud of Eli for being so brave even when he was a little uneasy at first and had to be accessed without numbing cream.  I think he helped a room full of nurses be better nurses.

SCAR +++++

So much has happened since my last post, the biggest being Silas's port surgery.   He had a joint bleed and a muscle bleed, and we needed to get him on prophy to prevent more bleeds. Everything went well.  We were very impressed with all the doctors, nurses, and staff at Peyton Manning Children's Hospital in Indianapolis.  The picture I posted to the left is my favorite.  Silas is such a sweet tempered baby.  He even smiled and waved when the child life specialist was taking him away for his surgery.

We had a lot of support.  My friend, Tiffany watched the older 4 children when I had to take Silas in for pre-op meetings.  My parents came down to watch the children at home while I was with Silas for surgery.  Matt couldn't come right away (clinicals).  So, my Dad stayed with us in the beginning.  While we were in IN, our life long family friends, Tom and Virginia even came down to help.


The hospital was amazing.  They took excellent care of Silas with so much love and compassion.  They also took care of me as the mom.  I was well informed during the whole process, and I could tell that they cared about all my concerns and desires as the mom.

Matt came to the hospital that evening.  He brought Eli with him.  Eli needed prophy while we were gone.  So, it made sense to bring him and treat him there.  It was a sweet time.  Eli and Silas really bonded on a new level.  Their hemophilia gives them a unique bond, and now they would both be on prophy.  Eli has just blossomed since Silas got his port.  He is thinking of Silas now, not just himself.  So, he sticks his chest out more, and never whines or complains about the needle.  Silas watches him.  It is precious.

After a few days, we came home, and continued the post-op factor treatments.  When we got home, we were blown away at the amount of work my parents and Tom and Virginia had done in the house: cleaning, repairs, new improvements.  Words cannot express how thankful we are for the work they've done.

Silas's surgery was two weeks ago, now.  We have had several perfect prophy treatments at home, until yesterday.  He has developed a hematoma over his port.  We're not sure why this has happened, but until it's cleared up, we are treating the bleed peripherally [via ER :(  ], then he will undergo a dye study to check his port for leaks.  If there is a leak, his brand new port will have to be replaced.  This is such a heavy burden on all of our hearts right now.

Yesterday, soon after a sponge bath, Silas's steri-strips finally came off.  So, now his scar is visible.  It looks very healthy, but it is still a big ugly scar on my baby's little chest.  Late last night,  as I was nursing him in the recliner, that scar was staring me in the face.  It (along with the newly developed hematoma) was making me sick to my stomach.  Nobody wants to see their baby's perfect little chest with a big scar on it.  It broke my heart, and I was tempted to mourn over this.  I couldn't let myself.

I started to think about all that scar represents:  All the hours of prayer and discussion over the decision to get a port, all the thought and love that motivated us to go ahead with the port, all the sweet nurses who tried (and often failed) to treat him peripherally for a bleed at the ER, the 3 1/2 years we've worked with Elijah's port, the intense training we received during Eli's post-op hospital stay those 3 1/2 years ago, the amazing support from all of Silas's brothers and sister, all the hard work that went into developing the technology of the port, all the years of study that Dr Kokoska (surgeon) and Dr Bush (anesthesiologist) spent in medical school, my parents and Tom and Virginia coming to help from Michigan, Bubble Wrapped Birth and all the love and support here, all the people around the globe praying for Silas, freedom to treat bleeds at home, and prevent bleeds with prophylaxis. . . The list is virtually unending.

So, I have a choice.  It's all about perspective.  I can choose to weep over my baby's now scarred chest, or I can choose to rejoice over that beautiful unending list of blessings when I look at Silas's scar.  So much love and care is represented there.  I just hope and pray that his port is o.k., and he doesn't need it to be replaced.  One step at a time.  God promises to take care of us, and we have to choose if we will trust Him or not.  I have to trust Him.  If I didn't, I couldn't get through this.

Thanks, Mom and Dad.  You both have taught me to have the correct perspective, and you were the inspiration for this post.

You may be wondering. . .

Silas - 1 month old

My sister, Julie, called me yesterday and wanted to know what would be happening with Silas now that we know he has hemophilia.  She asked some really good questions, and I thought some of you may be wondering about some things too. 

Q:  Is Silas getting bruises or bleeds yet?
A:  No.  Silas has no bruises.  Some of you may remember that Eli didn't get any bruises until those 2 hematomas showed up when he was 4 months old.  It is normal for hemophiliacs to have bruises (most always hematomas) all over just from normal life when they get more mobile.  These "superficial" bleeds do not need to be treated with factor, but bruising on a joint needs to be watched carefully as it may go into the joint. 

Q:  Is there ever any difference in severity levels?
A:  There are different levels of severity between hemophiliacs, but not within the same family.  My gene mutation is called 22 inversion.  That gene mutation is always severe hemophilia A.  Ana is a carrier like I am.  She bruises more easily, but she and I have another X that makes up for the hemo X.  Eli and Silas do not have another X.  So, they have severe hemophilia A, which means their bodies make <1% of clotting factor 8. 

Q:  When will he need to get factor?
A:  For the first year or year and a half of Silas's life, he will be receiving factor as needed.  For Eli, the first year included soft tissue bleeds in his cheeks (both sets ;o)  ) and worrisome head bumps (none turned out to be a head bleed). 

Q:  Will he be getting a port? and when?
A:  A port is not always a necessity; it is a choice.  We chose to get a port for Eli because we wanted to preserve his veins, and have an easy access in case of an emergency and a vein would be hard to find (dehydration, etc.)  We will probably get a port for Silas since it has worked out so well for Eli, but we will be making that final decision later.  He would get a port when he needs to begin prophylaxis.

Q:  When will he start prophylaxis?
A:  He will begin "prophy" when he is 18 months old or when he gets his first joint bleed.  Whichever happens first.

Q:  Are we doing anything extra to prevent bruises and bleeds?
A:  Yes.  He will start wearing a comfy cap when he starts spending more time on the floor (for 4 obvious reasons ;o)  ).  We bought a sleepy wrap because it is stronger and softer on him than a Maya Wrap or Moby Wrap.  We were not planning on letting him use the jumperoo, but some of my online hemo mom friends told me that they did not have any problems with the jumperoo at all and in fact, it helped their boys' legs get stronger.  Another mom suggested a product called Hugga-Bebe.  It is extra padding made for jumperoos and exersaucers.  It looks excellent, and Matt and I are looking into getting one and trying the jumperoo.  We will use knee pads and elbow pads to protect his joints, and pad his clothing.  By the way, an excellent company that makes padded clothing is Bruz Wear.  We have one pair of pants from them, and they're adorable!


I added a few more questions than Julie asked, but you may even have more.  Please ask anything in the comments section below.  We love to help people gain a better understanding of hemophilia.  Sometimes Blogger doesn't let people comment.  If that happens to you, let me know.  You can comment on facebook or email me at bubblewrappedbirth@yahoo.com

The First Year with a Little Bruiser

Well, we are 3 days away from hitting 38 weeks with Silas.  I have had a couple episodes of stronger braxton hicks contractions, but it looks like he will not be coming earlier than our other little ones did.  My history has been: 40 weeks 5 days, 40 weeks 3 days, 41 weeks, and 39 weeks 5 days.  As we get closer and closer to the big day, I am so excited to get him in my arms!!!  Sometimes, I also think about going through another first year with a baby who has a severe bleeding disorder.  

It was really scary and stressful with Eli.  We didn't understand much about hemophilia, and rushed him off to the HTC/ER any time he hurt himself to any degree.  We were so scared of missing a bleed.  I am glad we were so proactive, though.  It would've been awful if we had missed a bleed.  If Silas has hemophilia, I don't think it will be as bad as it was with Eli, but it will still be hard.  Things got so much easier when Eli got his port placed, and we were trained to care for him at home.  Silas (if affected) will have to get many pokes for bloodwork and emergency factor treatments, and that is so traumatic for a little guy.  We won't be able to treat him at home at first since we are not trained to access veins, especially tiny baby veins.  I am not looking forward to this part of the deal at all.  Oh, we'll make it.  Everything will work out.  I'm just being real about this because I know many of you can relate.